Prove It!

Monday afternoon, I glanced at Facebook while eating my lunch. A friend of mine who also uses a wheelchair had posted the following, which I am sharing with his permission. I have edited to protect the privacy of everyone involved:

“I just received word that my formal medical appeal to my insurance for my wheelchair has been approved. A bit of history:

I took delivery of my custom ultralight wheelchair last July. My claim was denied by insurance as the wheelchair was deemed medically unnecessary. My provider has been amazing in not sending this to collections and working with me on the $8,000 outstanding bill, even though the invoice is now 9 months old. They have held billing as they knew it was in appeal, and have not sent me past due notices.

With the help of a retained third party, I sent my insurer a packet of medical documentation (over an inch thick!) and crafted a letter with professional legalese accompanying the documentation explaining the provisions they needed to follow, and demanding a neutral board certified neurologist familiar with my condition assess the records.

Thirty days after receiving my letter, they decided they are going to pay after all. I’m grateful for all of the assistance of my third party advocate (he is a former claim reviewer, an attorney, and I could not have done it without him, truly), my equipment provider for holding onto the billing, and my physician office in assisting with medical documentation.

HOWEVER…I am very saddened and disappointed by the state of our healthcare reimbursement system. This is my EIGHTH ultralight chair, I have an incurable genetic condition, and will not see a cure in my lifetime. It is not like my need has, or will ever, change. It took all of my brain power to navigate the spaghetti of the appeal process, and I have three college degrees, am a business executive, and have over six years of experience managing medical insurance programs at large Fortune 500 companies.

If it has taken me nine months, and the assistance of outside professionals, while personally quarterbacking all of the players, what hope does the average person on the street have?

I’m very grateful by the resolution, it’s a great start to the week. I’m a bit disheartened though, as I’m reminded there are many people, with needs far greater than mine, facing equally complex up hill battles, but with not nearly the resources I can bring to bear to resolve them. What of their needs?”

His post struck a chord with me because my Monday morning started with a trip to the doctor. Not because I was sick – well, that’s really not true. I was sick last week and spent several days home in bed with a bad cold and laryngitis. But on Monday morning, I was feeling the best I had felt in a week.

The trip to the doctor was made for one reason: the government made me go. The government makes me go to the doctor every six months to prove I still have a disability.

I rely on a Medicaid-funded (read: funded by tax dollars) program for the personal care I require to live independently in the community. Since I use a publicly-funded program, there are rules. One of the rules requires me to see my doctor every six months. I call it the “prove I’m still disabled” appointment.

I go to the local medical center. I always make an early morning appointment so I can go before work when I have more energy. The nurse takes my blood pressure (114/74) and my temperature (97.4 F), talks to me about preventive screenings and verifies my information is still accurate. The doctor comes in and asks me if anything has changed since my last visit. We discuss life and my health. Monday we talked about Australia. She takes the form certifying my continued need for home care and asks when the completed form must be returned to the local Department of Social Services. During the October visit she performs my annual physical. I make an appointment to return in six months and leave for work.

Every. Six. Months. Whether or not I am sick. Since I began using the program in 2008, I have never been sick for one of these visits.

I have a progressive neuromuscular disability. My need for continued home care has not magically gone away. There is no magic pill I can take to make my mobility impairment disappear. But I have to prove I need assistance and because I am dependent on the program, I resign myself to playing the game.

People with disabilities are used to justifying their needs for adaptive equipment, medical treatment and services. My friend had to prove his need for his specific wheelchair. I have had to do the same, and also justify my continued need for home care.

Why? I suspect it is because somewhere there are people who are telling lies and committing fraud. And the insurance companies are businesses that want to make a profit so they have decided they will save money by making it difficult to access care, services or technology. If they make it difficult and deny a claim, maybe the patient won’t appeal and will just pay it.

I don’t have data to back up that claim. It’s just my opinion, as someone experienced in the game. Much like my friend, I anticipate I will be required to prove my need. I give my doctors specific examples when we are discussing my care so they can use the language in their reports and letters. My friend engaged a third party to assist him in his appeal and it took him NINE MONTHS to get approval for his chair.

A wheelchair is not a toy. It is not an accessory which is convenient to have. Those of us who rely on Personal Assistants literally cannot live or function without them.

My friend’s insurance company thought his independence was not worth $8,000. If my friend does not have access to the chair he needs, he will not work, he will not independently go shopping, do his laundry, make his own meals or any other activity of daily living.

The invoice for my wheelchair listed the value at $33,647. I am pretty sure my insurance company paid a reduced price, but I’m guessing it was still over $20,000.

What is your independence worth? Can you put a price tag on it? Can you prove you deserve it? Should you have to?


20 thoughts on “Prove It!

  1. I just purchased a lightweight wheelchair. Similar circumstances although the vendor knew ahead of time what I needed to do. Background – I was born with Spina Bifida and I just turned 60. It isn’t going away. And my insurance company has purchased similar chairs for me multiple times. Before the vendor can order the chair, he was required to do a home visit to ensure I was able to care for myself (and I guess the wheelchair). Then i had to have a face to face visit with my doctor (nothing over the phone although I’ve been her patient over 10 years) so she could certify I still have Spina Bifida and still need a wheelchair (surprise, I’m still not able to walk). Finally I had to go to a physical therapist to again certify (this makes professional #3) I need a wheelchair. I don’t have a physical therapist , I use a gym but that didn’t count! So I had to shop around for someone to fill out the forms. Closest I could find was 30 miles from my house, which I drove to (and cancelled twice due to the snow). Each time I had a co-pay, and the insurance had to pay for the visit, a waste of money. My chair was approved by insurance in less than 2 weeks, but I spent time and money running around for no reason. I understand there are people who rip off the system. The vendor told me the advertisements on TV for free scooters has resulted in a huge increase in Medicare claims for scooters that are not necessary, so Medicare put new requirements in place for pre-approval which other insurance companies have followed (and the scooter claims went down). But really. For people with conditions that are known to require mobility devicies – give me a break. I promise if I am cured I will return my wheelchair to the insurance company. Until then, I was born with SB, it won’t go away, and I STILL can’t walk!


    • The Medicare regulations certainly influence all of the other insurance plans. There are advocacy efforts to remove the “homebound” component from the regulations. It would be a start, but more must be done. Particularly for those of us with diagnoses which will never change.


  2. Being in the insurance industry (though not in the healthcare arena) I can attest to rampant insurance fraud. However, in cases involving disability claims you would think they could streamline the process and differentiate between the short-term and the permanent. I would think any cost-saving efforts should be limited to investigating cases of short-term disability. But what do I know?


    • I have no doubt there is fraud. But most of the people I know who rely on complex medical technology and personal assistance would never jeopardize their independent life with fraud. As you say, long term disability is different than short term. After 40 years, I’m fairly certain mine is here to stay.


  3. I am sorry to all of you who are using medical equipment and assistance in your daily lives that you have to deal with the “red tape” involved in getting it. and have to Prove that you need it. That is absolutely wrong.
    Do I think 3 visits, on 3 different times is a little over the top, absolutely. However, part of me applauds the system that will be “keeping an eye on” patients. I have noticed this more and more with my parents care as they continue to age. There might not be anything wrong with them at the visit, but knowing they are being examined and checked out, gives me some piece of mind.
    Perhaps that was also the intent of the 2X year visit. It forces you to go and make the contact and maintain a relationship with the Dr.and maybe, hopefully, not have to wait 8 months in the future when things are needed, And be honest, would you all make the visit if you didn’t have to? Probably not, because you are all so independent already and wouldn’t want to make the arrangements that would involve a visit. But what if, something minor, was discovered during one of those visits that could be addressed and helped you maintain a better quality of life such as a script for physical therapy, or a massage, or them knowing of a new place that allows for swimming therapy, or a new Dr. to address foot issues? I don’t know, it could be any little thing. Use the time for more of netwoking and resoucing, and perhaps it wouldn’t be so bad of a visit.
    Just trying to put another side to the “prove it”


    • There is a point to the frequent visits, and I’m sure there are many who benefit from the check-ups. I have indeed used them to help educate the professionals in my physician’s office about Consumer Directed Personal Assistance. My doctor knows me, and knows I will not call unless I am truly sick. So, when I do call, she treats it seriously. I would be fine with an annual visit. After all, I have to go once a year for a physical anyway.


      • What usually happens to me is that I’ll try to explain something like this to a person with no context, and they assume I’m just not talking to the right people or must have done something wrong in whatever paperwork I had to file. It’s so frustrating because I feel like the blanket assumption is that the person with a disability doesn’t know what he/she is talking about.

        I know this isn’t a redefining disability post, specifically, but I’d like to include it when I get back to collecting for the anthologies. Do you think your friend would be okay with it?


  4. As I read this all I could think of was what a waste of resources – for everyone; for the insurance company and all their staff allocated to preventing payments,and to the insured needing to marshall resources over an extended period of time to prove a claim. When everyone could be doing something productive – and happily so.


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